Her kidneys and lungs are failing, her mobility is limited, but Emma Marie Eddy’s end-of-life wishes remain simple: She wants to stay out of hospital as long as possible and not be kept alive on machines.
“My body, from the neck down, is past its best-before date, but my mind is clear,” the 84-year-old said in a telephone interview from Dartmouth, N.S. “I don’t want them to put me down, then bring me back again.”
Ms. Eddy is one of about 200 Canadians who went through a unique program in Nova Scotia that helps frail, elderly patients decide whether to go through with medical procedures that could do more harm than good. At this stage of life, complications such as cognitive decline and loss of function could land them in nursing home; an infection or lung problems could land them in intensive care.
After undergoing a personalized assessment, which takes about two hours, many opt for less aggressive measures – and some wonder why they were even offered the treatments in the first place.
Since the program began in September, 2009, scheduled tests, operations and procedures among participants have declined by 76 per cent, according to Paige Moorhouse, who co-founded the palliative and therapeutic harmonization program at the Dalhousie University and QEII Health Sciences Centre.
“This is not about limiting procedures in older people,” said Dr. Moorhouse, a geriatrician in Halifax. “This is an opportunity to provide better care with fewer resources.”
The program, the only one of its kind in the country, is now being looked at by practitioners in Ontario, New Brunswick, Prince Edward Island and Alberta. It challenges the conventional wisdom that the elderly are demanding high-tech procedures and medical services, placing an unnecessarily high burden on a strained health-care system.
One-quarter of all health-care costs are devoted to caring for patients in their last year of life – but as this program illustrates, many patients may not actually want these invasive procedures.
“The health-care system is drowning in its own juices,” said Tom Foreman, an Ottawa bioethicist who has consulted on many end-of-life cases, “We already are well beyond our abilities to care for all the people who need care.”
In this particular program, patients who were an average age of 81 were booked for open heart surgery, heart-valve replacements and, in one case, a series of three operations to repair an aorta. Others were to undergo chemotherapy for cancer and dialysis for kidney failure. Some faced investigations for a suspicious mass, exploratory procedures for cancer or tests that necessitated a hospital admission.
Only those who meet the definition of frail and elderly – having accumulated multiple chronic health issues over time – are eligible for the program, which involves getting a detailed history and assessing both cognitive function and caregiver support available at home.
Half of the participants were slated to undergo a medical test, procedure or operation, while the other half were referred based on their health status and the need to make future decisions. “People tend to want less aggressive interventions when they have all the information on the table,” Dr. Moorhouse said.
What patients learn is that while they may survive the operation, test or procedure, they may lose function or mobility, prompting them instead to opt for more conservative management of their ailment, such as medication.
“Some patients would say, ‘Why would they even offer me this surgery when it’s clear there’s a high risk I might not be able to live at home or my memory will be worse?’” Dr. Moorhouse said.
Many decisions about treatment are often made based on clinical-trial results that have been done on younger and healthier subjects. So in a typical setting, a patient may learn the risks of dying of infections, while other risks – loss of memory and mobility – are not necessarily considered.
“When you go through their medical chart, it’s very revealing,” Dr. Moorhouse said. “Every time the patient went into hospital, they experienced a decline. Why are we doing these aggressive measures that have immediate chance of risk but limited chance of benefit?”
Laurie Mallery, a geriatrician and co-founder the program, said many of these patients have complicated issues and see a number of specialists; this program puts the whole picture together.
“We’re trying to help people learn how to make health-care decisions, particularly for our population for frail, older adults,” said Dr. Mallery, head of the division of geriatric medicine at Dalhousie University.
She cited one of her patients, Donald Valardo, who had a stroke, then contracted a superbug infection in 2006. He was put on linezolid to treat an infection, but it had nasty side effects: nausea and anemia.
Dawn Valardo said the program helped clarify her and her husband’s options. “We came to the conclusion, if he stayed on that drug, it would kill him, but if he came off it, he could also go. We had a decision to make,” Ms. Valardo said. “We talked and belaboured it and came to the conclusion that we had to try taking him off. Low and behold, he started to thrive.”
Mr. Valardo eventually grew ill again – he suffered kidney failure – and he decided to forgo dialysis. He died at age 74 in March, 2010.
“He had a marvellous breakfast one morning – bacon and eggs, and toast and coffee – went upstairs and he sat on his chair, and I will never forget his words,” Ms Valardo recalled: “‘I’m tired.’ I went downstairs and in five minutes he was gone.”